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Purple feet and pain, anything i can do?


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Hi, I have had all sorts of symptoms with my POTS and other diseases. Even with the pots diagnonsis from Vanderbilt ( along with many other diagnosis) I am very often told to breath in a paper bag that I am hyperventalating. ARRGGHHH! I am so sick of it. Sorry my question is this. I have had some numbing and tingling before and I have had some stroke like symptoms, but now EVERYTIME I sit down my feet turn almost black and it is so painful that I cry, can anyone tell me how to fix this or get it to stop. I have tried using a cane to walk per someones advice but ofcourse it is no help. Right now I feel like my feet and calves are going to pop, it is so painful, no pain meds help I was wondering if something could help to prevent it. Can I myself do anything to help this right now? Thanks for your help.

Also, does anyone here have Mast Cell Activation? How does it affect your POTS? Mine is rough. Just wanted to know if anyone else here could give me some insight. They put me on Beta Blockers at vanderbilt but I started going into Anaphalaxis about two weeks after I got home. Any ideas? Your ideas are appreciated.

Thanks,

Lindsay

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lindsay -

i said hi on your post on another thread, but again welcome:-) just out of curiousity, were you a research patient at vandy or outpatient? i'm asking as i was just there in may. i actually had lots of purple feet problems while there as i had to sit still with my feet on the ground so much during the med trials. i have had purple feet problems for a long while though. i get some pain/discomfort but it sounds that you have a lot more pain. for me they are better when i am laying down, reclined, have my feet up, etc. and then support hose help me a lot. i can't always tolerate them with the heat as i tend to then get a rash but when i can wear them they help my feet & lower legs a lot. i wear the 30-40mmHg compression, waist high.

good luck,

:-)melissa

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lindsay -

i said hi on your post on another thread, but again welcome:-)  just out of curiousity, were you a research patient at vandy or outpatient?  i'm asking as i was just there in may.  i actually had lots of purple feet problems while there as i had to sit still with my feet on the ground so much during the med trials.  i have had purple feet problems for a long while though.  i get some pain/discomfort but it sounds that you have a lot more pain.  for me they are better when i am laying down, reclined, have my feet up, etc.  and then support hose help me a lot.  i can't always tolerate them with the heat as i tend to then get a rash but when i can wear them they help my feet & lower legs a lot.  i wear the 30-40mmHg compression, waist high.

good luck,

:-)melissa

I was inpatient research in June. My hose are on order, they dont carry the 30/40 ones here so they had to order them. I have not yet tried them. I hope that they will help. I have not yet stabled out from my trip to Vanderbilt and hope it happens soon. I dont know what is going on. Thanks I look forward to the hose now!

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